Build & Grow an Organization

NORD staff members welcome opportunities to share their experience and advice with individuals who are launching or leading rare disease patient organizations. In 2008, NORD established the Nonprofit Resource Center (NPRC) with support from a Patient Link grant provided by the Medtronic Foundation. Additional funding has been provided from the estate of Joanne P. Robinson. The NPRC is a place where patient advocates can learn the basic steps of establishing an organization for the purpose of helping patients and families affected by a specific rare disease.

Along with helpful tools and practical advice, NORD staff members also share lessons and best practices they have learned over the years since NORD was established in 1983.

Supporting the Patient Community

The rare disease patient community includes people afflicted with a wide range of serious and life-threatening disorders and syndromes. Their challenges are significant. Many are uninsured or underinsured. Some go years without the correct diagnosis, and most live day-to-day with concern about what the future may hold. Improving the services and effectiveness of rare disease patient organizations is an important way to begin alleviating the unique problems faced by these families.

NORD supports the efforts of patient organizations by sharing information to help them serve their members in the most effective and meaningful ways. NORD helps patient organizations strengthen their advocacy, improve their governance, expand their programs, and develop strategic growth.

Leading Toward Success

Over the years, NORD has effectively engaged both new and existing growth-oriented patient organizations, always promoting best practices in governance and management, innovation in patient/family services, and advocacy deeply rooted in integrity. In their efforts to serve patient communities struggling with very significant challenges, patient organizations must balance the dual challenges of meeting today’s needs and evolving to meet those of the future.

The following materials are provided to help leaders of patient groups build and grow their organizations: